November 30th already! This month has flown by. For my last thankful post for the year, I want to go back to two people who I only mentioned briefly in my very first thankful post. I thought about it and I felt like these very special people kind of got the short end of the stick since I included them in a lump with the first nine things/people I said I was thankful for.
As I mentioned yesterday, I have learned from Lisa and from my own experiences that caretaking for someone who is sick is often an extremely thankless job. Most people are usually concerned for the person who is sick. The sick person often gets the cards, support, the phone calls, the emails, and the outpouring of kindness... But the caretakers often go overlooked even though they are struggling with the worry, stress, and pure exhaustion that directly accompanies caring for a loved one who is sick.
I am so thankful for the people who have been my caretakers since I have been sick. I am not sure how I would have survived thus far without them.
Brad, first of all has amazed me with his strength through this time. He has never wavered in assuring me that everything will turn out okay in the end. He has endured many mascara soaked shirts. He has picked up the pieces when everything has seemed to fall apart. He has picked up the slack of not only working full time, but doing so much of the "extras" such as housework, grocery shopping, cooking, picking up prescriptions, driving me all over the Midwest to doctors....
He has rubbed my feet or my back each night to help me fall asleep. He puts my compression stockings on each morning (which I am convinced would become a viral YouTube video if we ever posted it). That's love people.
When I feel the guilt of, "but you didn't sign up for a wife with an illness" he always tells me I'm silly and assures me he loves me for me, with or without an illness. Brad has seen the good, the bad, and the ugly, that only a caretaker often experiences with someone who is sick. I told Brad the other day, that this past year could have made us stronger, or could have made us fall apart at the seams. I am so thankful that I can say that our marriage is now stronger because of what we have been experiencing together. Brad, I know you do not often get told this, but I am so, so thankful for you and everything you do for US. You are the love of my life, and my rock. I love you and I am so thankful for you.
My Mom, has also been one of my caretakers during this time (who am I kidding...all of my life). My Mom has understood that while I am sick, it is still important to allow me to do normal things, and to get out into the world. I look forward to our Sunday afternoons, because this is the time my Mom picks me up and we go to church, to lunch, and shopping. She pushes me in my wheelchair like she is an expert.
My Mom is such a sounding board and a voice of reason for me. She truly gives the best advice. When I get to my hysterical point, my Mom is best at calming me down and helping me gain perspective. She always reminds me of how strong I am and that I will get over this hurdle I am facing. My Mom also has done so many thankless tasks for me as well including driving me all over to doctors, taking my blood pressure, taking me to the ER, constantly lifting me up when I get down...
I know my Mom is tired. She is tired after having two of her daughters sick in the last three years. She is tired with worry. But she never lets you know. My Mother is the strongest woman I know. I truly believe she is a saint. I am thankful that I can call my Mom one of my best friends. She is my biggest fan. I love you Mama. Thank you for everything.
And to end this post and to close out November, I am thankful for the opportunities and twists and turns that lie ahead. I am thankful for the ability to see how my story continues to unfold. Pure and simple, I am thankful for my life.
Tuesday, November 30, 2010
Monday, November 29, 2010
11/29/10 Thankful
Today I am thankful for the people who inspire me. I am thankful for the living examples in my life that have either overcome, or are living with chronic illnesses in the most positive ways that they can...
I have family members and friends with MS who are running marathons, working full time jobs, raising kids...
I have family members and friends who have beaten cancer, or are currently in the process of beating cancer.
I have a family member living life to the fullest with PAN Vasculitis.
I have family members and friends who live with pain from chronic illnesses day to day, but still CHOOSE to live life to the fullest.
These are people who I consider to be heroes.
When I was being tested for Myasthenia Gravis, my friend Theresa put me into contact with a woman she sings in the choir with atSt. Thomas
Lisa Gigliotti was diagnosed with Rheumatoid Arthritis AND Myasthenia Gravis in her twenties. When she was wheelchair bound, both her Mother and her Grandmother who were her caretakers (think feeding, bathing, dressing) were killed in a car crash on Christmas. The pain she had to deal with was insurmountable but through it all she has remained hands down one of the (if not THE) most positive individuals I have ever met. Lisa has gone from living in a nursing home in a wheelchair, to becoming a successful attorney and now, law judge (who can now walk thanks to, I believe, 9 orthopaedic surgeries so far).
I have had the fortunate opportunity to talk to Lisa on the phone a couple of times. I will never forget the time she told me, "Katie, I am so proud of you. Has anyone told you that? You are being such an amazing advocate for yourself, and you are so positive and have such strength." Her kind words brought on such a flood of emotions as she told ME, what I thought about her. Lisa has always ended our phone conversations with "CORAGGIO Katie" (courage in Italian).
Lisa later sent me the two books she has released so far with personalized messages written inside. I have read her first book three times. Whenever I have my roughest days, I read parts of Lisa's book and it immediately puts things into perspective. I am not sure if it is usual for people to come across books in their lifetime that change their lives forever. But for me her book has done just that.
Through Lisa's writings and advice, she has taught me so much...too much to include everything in this one post. But here are a few:
That being the victim is a waste of time, and a means to kill any hope that is out there. That there is ALWAYS hope and options, no matter what a doctor says. That Italian Testadura (Hardheadedness) will get you very far in life if you use it for the right reasons. When things seem to be slipping more and more out of control, there is always SOMETHING you can find that you can control. That it is so important to embrace your loved ones, and tell them how much they mean to you and how much you love them each day. That self-love is key. That caretakers have a thankless job and I must acknowledge this and give thanks where thanks is due. That no matter how scared you are, it is important to always take action and be the best advocate you can be because no one else will do it for you. That having a gratitude attitude each and every day is important for mental health. That CORAGGIO is the backbone of getting through anything.
Lisa will NEVER know the impact she has had on my life during the last few months. Her influence has been life changing for me. I look at her like she is a celebrity. Or someone that was sent to me at just the right time in my life. Or a heavenly angel. I cannot wait until the day I finally get to hug her in person and tell her how much she means to me.
Lisa has a website that I look at often. You can find it here.
I have read her books, Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain, and Loss, and I am currently reading, Coraggio! Lessons for living from an Italian Grandmother. The Courage to Believe in Miracles. I am eagerly awaiting the next two books she will be releasing in the next year.
I also want to include the links of Lisa telling HER story. I have probably watched them a few dozen times already; especially when I needed a glimmer of hope, or a reminder that there are always things I can take charge of. This is part One, and this is part Two of Lisa telling her story.
And this is the link to an interview she gave to aDetroit
Lisa Gigliotti is a hero. And I am thankful for her, and all of the other heroes in my life.
I have family members and friends with MS who are running marathons, working full time jobs, raising kids...
I have family members and friends who have beaten cancer, or are currently in the process of beating cancer.
I have a family member living life to the fullest with PAN Vasculitis.
I have family members and friends who live with pain from chronic illnesses day to day, but still CHOOSE to live life to the fullest.
These are people who I consider to be heroes.
When I was being tested for Myasthenia Gravis, my friend Theresa put me into contact with a woman she sings in the choir with at
Lisa Gigliotti was diagnosed with Rheumatoid Arthritis AND Myasthenia Gravis in her twenties. When she was wheelchair bound, both her Mother and her Grandmother who were her caretakers (think feeding, bathing, dressing) were killed in a car crash on Christmas. The pain she had to deal with was insurmountable but through it all she has remained hands down one of the (if not THE) most positive individuals I have ever met. Lisa has gone from living in a nursing home in a wheelchair, to becoming a successful attorney and now, law judge (who can now walk thanks to, I believe, 9 orthopaedic surgeries so far).
I have had the fortunate opportunity to talk to Lisa on the phone a couple of times. I will never forget the time she told me, "Katie, I am so proud of you. Has anyone told you that? You are being such an amazing advocate for yourself, and you are so positive and have such strength." Her kind words brought on such a flood of emotions as she told ME, what I thought about her. Lisa has always ended our phone conversations with "CORAGGIO Katie" (courage in Italian).
Lisa later sent me the two books she has released so far with personalized messages written inside. I have read her first book three times. Whenever I have my roughest days, I read parts of Lisa's book and it immediately puts things into perspective. I am not sure if it is usual for people to come across books in their lifetime that change their lives forever. But for me her book has done just that.
Through Lisa's writings and advice, she has taught me so much...too much to include everything in this one post. But here are a few:
That being the victim is a waste of time, and a means to kill any hope that is out there. That there is ALWAYS hope and options, no matter what a doctor says. That Italian Testadura (Hardheadedness) will get you very far in life if you use it for the right reasons. When things seem to be slipping more and more out of control, there is always SOMETHING you can find that you can control. That it is so important to embrace your loved ones, and tell them how much they mean to you and how much you love them each day. That self-love is key. That caretakers have a thankless job and I must acknowledge this and give thanks where thanks is due. That no matter how scared you are, it is important to always take action and be the best advocate you can be because no one else will do it for you. That having a gratitude attitude each and every day is important for mental health. That CORAGGIO is the backbone of getting through anything.
Lisa will NEVER know the impact she has had on my life during the last few months. Her influence has been life changing for me. I look at her like she is a celebrity. Or someone that was sent to me at just the right time in my life. Or a heavenly angel. I cannot wait until the day I finally get to hug her in person and tell her how much she means to me.
Lisa has a website that I look at often. You can find it here.
I have read her books, Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain, and Loss, and I am currently reading, Coraggio! Lessons for living from an Italian Grandmother. The Courage to Believe in Miracles. I am eagerly awaiting the next two books she will be releasing in the next year.
I also want to include the links of Lisa telling HER story. I have probably watched them a few dozen times already; especially when I needed a glimmer of hope, or a reminder that there are always things I can take charge of. This is part One, and this is part Two of Lisa telling her story.
And this is the link to an interview she gave to a
Lisa Gigliotti is a hero. And I am thankful for her, and all of the other heroes in my life.
Awesomeness
So, I think this merits it's own special blog post. After I got home from Fort Wayne today from getting a T9 nerve block, I had a message on my phone to call the famous Dr. Tinkle's office.
To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients. He has written two books about it to help people understand the complexity of the disorder. He wrote these two books as handbooks for family, the person diagnosed, or for other doctors. I, of course, immediately ordered both books and have read them a couple of times already. They are so easy to read, and they help me understand how Ehlers Danlos can/is effecting many different parts of my body. The books also give many helpful ways to manage the disorder depending on the symptoms and the body systems effected. Dr. Tinkle is a geneticist and is the co-director of the Ehlers Danlos clinic at Cincinnati's Children Hospital. He speaks all over the world about EDS.
So then I went into stalker mode and I emailed Dr. Tinkle to ask a few questions-mainly if he sees adults since he works at the Children's Hospital. I didn't think I would ever hear back, but I thought it was worth a try. Well, he emailed me back the next day (a Saturday) and told me that he does see adults and I should come see him. He said I should make an appointment now, since it takes a long time to get in. He explained that he helps with a treatment plan once an EDS or another connective tissue diagnosis has been made.
Well, he was right about taking a while to get in. I called a month ago, and up until today my appointment was for February 28th. I have been calling each day to see if there have been any cancellations, with no luck. I actually counted the weeks in the car on the way to Fort Wayne today and told my Dad I still had 13 weeks.
With my confirmed Ehlers Danlos diagnosis made in Fort Wayne, Larry (Dr. Nassar) went into miracle worker mode and called and spoke to Dr. Tinkle himself last Monday. Dr. Tinkle explained some of the disorder to him, and said to call the woman in charge of the connective tissue clinic and they would see what they could do. I called last Wednesday and did not hear anything which did not surprise me since it was a holiday weekend.
Sooo, that brings me to today. I called Dr. Tinkle's office back after I listened to the message and the person I talked to asked if I could come on December 9th! Next week! 10 days instead of 13 weeks! I said I would MAKE it work.
So it is set. Brad and I will be going to Cincinnati next Wednesday night. We will be spending the night at my Aunt Mada and Uncle Brock's house. Thursday morning at 10:30 I meet with an Ehlers Danlos physical therapist who works with Dr. Tinkle. Then I am seeing Dr. Tinkle at 3:30. I am his last patient of the day. They said to plan on being there for a while since the first visits are usually long ones. So we will probably stay at my Aunt and Uncle's house again and come home Friday. I wish I could bring a video camera and at least tape the physical therapy part so I can bring it to my therapist here. I will have to check on that...
When I got off of the phone I felt like I had won the lottery. Is that sad? :)
If you want to read more about the famous Dr. Tinkle, here is a link to his bio:
http://www.cincinnatichildrens.org/svc/alpha/c/dysplasias/fs/fac/brad-tinkle.htm
You can also find his books here and here.
Hopefully I will come away with at least a start of a plan of action to show Ehlers Danlos whose boss!
I feel pretty lucky tonight to have so many people in my corner.
To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients. He has written two books about it to help people understand the complexity of the disorder. He wrote these two books as handbooks for family, the person diagnosed, or for other doctors. I, of course, immediately ordered both books and have read them a couple of times already. They are so easy to read, and they help me understand how Ehlers Danlos can/is effecting many different parts of my body. The books also give many helpful ways to manage the disorder depending on the symptoms and the body systems effected. Dr. Tinkle is a geneticist and is the co-director of the Ehlers Danlos clinic at Cincinnati's Children Hospital. He speaks all over the world about EDS.
So then I went into stalker mode and I emailed Dr. Tinkle to ask a few questions-mainly if he sees adults since he works at the Children's Hospital. I didn't think I would ever hear back, but I thought it was worth a try. Well, he emailed me back the next day (a Saturday) and told me that he does see adults and I should come see him. He said I should make an appointment now, since it takes a long time to get in. He explained that he helps with a treatment plan once an EDS or another connective tissue diagnosis has been made.
Well, he was right about taking a while to get in. I called a month ago, and up until today my appointment was for February 28th. I have been calling each day to see if there have been any cancellations, with no luck. I actually counted the weeks in the car on the way to Fort Wayne today and told my Dad I still had 13 weeks.
With my confirmed Ehlers Danlos diagnosis made in Fort Wayne, Larry (Dr. Nassar) went into miracle worker mode and called and spoke to Dr. Tinkle himself last Monday. Dr. Tinkle explained some of the disorder to him, and said to call the woman in charge of the connective tissue clinic and they would see what they could do. I called last Wednesday and did not hear anything which did not surprise me since it was a holiday weekend.
Sooo, that brings me to today. I called Dr. Tinkle's office back after I listened to the message and the person I talked to asked if I could come on December 9th! Next week! 10 days instead of 13 weeks! I said I would MAKE it work.
So it is set. Brad and I will be going to Cincinnati next Wednesday night. We will be spending the night at my Aunt Mada and Uncle Brock's house. Thursday morning at 10:30 I meet with an Ehlers Danlos physical therapist who works with Dr. Tinkle. Then I am seeing Dr. Tinkle at 3:30. I am his last patient of the day. They said to plan on being there for a while since the first visits are usually long ones. So we will probably stay at my Aunt and Uncle's house again and come home Friday. I wish I could bring a video camera and at least tape the physical therapy part so I can bring it to my therapist here. I will have to check on that...
When I got off of the phone I felt like I had won the lottery. Is that sad? :)
If you want to read more about the famous Dr. Tinkle, here is a link to his bio:
http://www.cincinnatichildrens.org/svc/alpha/c/dysplasias/fs/fac/brad-tinkle.htm
You can also find his books here and here.
Hopefully I will come away with at least a start of a plan of action to show Ehlers Danlos whose boss!
I feel pretty lucky tonight to have so many people in my corner.
Sunday, November 28, 2010
11/28/10 Thankful
Today I am thankful for friendships...all of the friendships I have had in my 29 years. I am thankful for friends who are near and far. I am thankful for friends who know what kind of day I am having when I say a simple "hello" when I pick up the phone.
I am thankful for my gymnastics friends. For my elementary and middle school friends. For my Sexton friends. For my Spartan friends. For my Wexford friends. For my neighbor friends. For family friends. For friends of friends. For the friends who once were Brad's friends but who now are OUR friends.
I am thankful for that person at the grocery store who offers a friendly gesture, helping hand, or simple smile.
I am so thankful for those few friends who have known me since I was a child, and who still know me better than most.
I am thankful for the friendships I have that no matter how much time passes, we can still pick up right where we left off.
I am thankful for the friends I have not met yet who will continue to shape who I am.
I am thankful for my gymnastics friends. For my elementary and middle school friends. For my Sexton friends. For my Spartan friends. For my Wexford friends. For my neighbor friends. For family friends. For friends of friends. For the friends who once were Brad's friends but who now are OUR friends.
I am thankful for that person at the grocery store who offers a friendly gesture, helping hand, or simple smile.
I am so thankful for those few friends who have known me since I was a child, and who still know me better than most.
I am thankful for the friendships I have that no matter how much time passes, we can still pick up right where we left off.
I am thankful for the friends I have not met yet who will continue to shape who I am.
Saturday, November 27, 2010
11/27/10 Thankful
Today I am thankful for music. I have always loved all kinds of music. I have already mentioned how music has played such a role in keeping me sane during this time. I am thankful how music can change my mood in an instant. I am thankful how music can inspire me. I am thankful how music can evoke so many emotions. I am thankful for the songs that seem to be written just for me. If you walked into my house during the day, you would almost always hear music playing.
I love this quote from Ray Charles:
“I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water.”
I, too, feel like now more than ever that music is a necessity for me. I consider music to be an integral piece of my treatment plan.
Here are some of the top songs that have meant a lot to me in the past year for a variety of reasons. (It's a pretty random list, I know):
I love this quote from Ray Charles:
“I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water.”
I, too, feel like now more than ever that music is a necessity for me. I consider music to be an integral piece of my treatment plan.
Here are some of the top songs that have meant a lot to me in the past year for a variety of reasons. (It's a pretty random list, I know):
- The Sunshine Song (Jason Mraz)
- Let It Be (The Beatles)
- Lots of Counting Crows including A Long December
- Ordinary Day and Lucky Me (Great Big Sea)
- Fix You (Coldplay)
- I Will Show You Love (Kendall Payne)
- Fight Outta You (Ben Harper)
- Her Diamonds (Rob Thomas)
- Not Afraid (Eminem)
- Fighter (Christina Aguilera)
- Gravity (John Mayer)
- Just Breathe (Pearl Jam)
- Pig, One Sweet World, Grey Street (Dave Mathews Band)
- Man In the Mirror (Michael Jackson)
- Avalanche (Chris Trapper)
- Jesus Take the Wheel (Carrie Underwood)
- Lots of Ray Lamontagne
- Lots of Jimmy Buffett
Friday, November 26, 2010
11/26/10 Thankful
Today I am thankful for my extended family. I am thankful for the safety net and love that my extended family provides. I am thankful to know that I could call up any one of my cousins, uncles, or aunts, and they would have my back in a heartbeat. I am thankful for the times all of my extended family is one place. It doesn't happen often, but when it does watch out. It is crazy, it is loud, it is unpredictable, but it is us. And I wouldn't have it any other way.
Five For Friday 11/26/10
1. I started my Beta Blocker, Propranolol and started wearing compression stockings. I was terrified of swallowing my first pill because I've had a history of being allergic to medications, but thankfully nothing crazy happened. My compression stockings are definitely going to take some time to get used to, and I would appreciate any tips on how to get them on in less than 20 minutes.
2. Brad put up our Christmas tree and I listened to Christmas music all week. My newest Christmas albums are the Chris Trapper Christmas album (Thanks Mada) and the Glee Christmas album. I love this time of year.
3. Thanksgiving was one of the best days I've had in a long time. It was a day filled with so much love, laughter, and family.
AND, Uncle Steve did NOT burn the rolls. They were the best rolls I've ever had! Love you Uncle Steve!
4. I spent some quality time with the beautiful Cecilia Jane. She makes me so very happy. (Please take note of the Michigan State Bib her parents (who are U of M graduates) decked her out in).
5. Monica came to visit! Monica and I have been friends since we were about 6 years old, and we grew up together in the gym. She is one of those rare friends you have in your life that no matter how much time passes, you are always able to pick up right where you left off. Love you Mo Mo!
2. Brad put up our Christmas tree and I listened to Christmas music all week. My newest Christmas albums are the Chris Trapper Christmas album (Thanks Mada) and the Glee Christmas album. I love this time of year.
3. Thanksgiving was one of the best days I've had in a long time. It was a day filled with so much love, laughter, and family.
AND, Uncle Steve did NOT burn the rolls. They were the best rolls I've ever had! Love you Uncle Steve!
4. I spent some quality time with the beautiful Cecilia Jane. She makes me so very happy. (Please take note of the Michigan State Bib her parents (who are U of M graduates) decked her out in).
5. Monica came to visit! Monica and I have been friends since we were about 6 years old, and we grew up together in the gym. She is one of those rare friends you have in your life that no matter how much time passes, you are always able to pick up right where you left off. Love you Mo Mo!
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